One Patient's Positive Perspectives

Posts tagged ‘cloud’

The brain fog moment and lupus crossed wires

CNS lupus involvement

CNS Lupus strikes unexpectedly

Just when you would like to hope and think it is gone forever and never coming back, lupus brain fog and crossed wires show up again, unexpectedly.  It is not that the head is not on straight, it is just that sometimes, just for a moment, it is unclear what week or day you are in, or what subject you just wrote an email about.  Recently, several similar projects overlapped in the same time and space, and it was a sure prescription for a mental mishap!  While finishing up interviews for one vacant job, new applications just started coming in for another.

Here is where the confusion starts.  Keeping the two recruitments straight was a mental quagmire.  The call was placed just a little too early on a Monday morning for the normal state of my “lupus brain,” and a group of questions were asked and answered as I spoke with an applicant’s work reference.  All throughout the call, it seemed odd how much all the answers were describing skills and abilities that fit the other open job, perfectly!

Too early on Monday

Returning to my office to re-do the form

After filling out the title of the position on the required form for Human Resources and filling in answers in the comment areas, I signed it.  It was then I realized things had gotten a little murky.

Walking over to my assistant’s desk, I began explaining how unusual it was that the applicant seemed to fit the other position, but not the one she had applied for.  My assistant looked up at me with a very quizzical look, explaining that the answers fit the position that applicant was seeking!


Crossed wires!

The sudden realization hung heavily in the awkward moment, as humility stepped forward, compelled to admit to a mental crossed wire.  Reclaiming the form, and returning to my office to redo it, the correct job title and all the answers were copied into a new version.  Now, the applicant seemed to fit the job perfectly, and even qualified for a second interview.

It is amazing what a little central nervous system lupus can do when you least expect it!  It might even inadvertently alter the course of someone’s career, if not kept in check by a good assistant, not afraid to say, “what are you thinking?” when it is needed most!  A good assistant is hard to come by, and no, you cannot have mine!


Lupus Teleconference on Conigitive Dysfunction and Lupus Brain Fog

Upcoming Lupus Teleconference

Upcoming Lupus Teleconference

I would like to heartily recommend this FREE April 18, 2013 teleconference to my blog readers.  Although I will be on an airplane flying home to Arizona from the east coast on the day of the conference, I hope to be able to look it up on the Lupus Foundation web site to download the recorded version and transcript afterward.

Perhaps, I will even be flying through real clouds and fog, instead of the lupus brain fog that I experience so many mornings with my own lupus.

I urge you to register by following the link below if you would like to learn more about cognitive dysfunction and lupus brain fog, from an expert on the subject.

Lupus Adventurer

Information about the seminar from the North Carolina chapter:

Lupus: Ask the Experts  is a series of live educational teleconferences and pre-recorded webcasts on a variety of topics designed to give you important information about living with lupus. Don’t miss this opportunity to learn from some of the world’s leading lupus experts from the comfort and privacy of your home. Participate in several or just the one that most interests you.Live teleconferences last one hour and are accessible via a toll-free number. Teleconferences will also be recorded and posted online. Pre-Registration is required.  Call-in/log-in information will be provided to all registrants one week before the event.


Thursday, April 18, 2013 from 7:00 PM to 8:00 PM (EDT)

Michael Parsons, PhD Cleveland Clinic

As many as half of all people with lupus describe feelings of confusion, fatigue, memory loss, and difficulty expressing their thoughts. This collection of symptoms is termed cognitive dysfunction. Learn more about “lupus fog”, its symptoms and treatment options.  Register by Thursday, April 11th.  Click Here to Register

This Ask The Experts series is offered as a free service of the Lupus Foundation of America, North Carolina Chapter.  All costs of services for patients and families are underwritten by the fundraising efforts of the North Carolina Chapter, including the Walk to End Lupus Now™The Lupus Foundation of America, North Carolina Chapter is proud to be a source of information about lupus.  Our comments are based on professional advice, published experience and expert opinion, but do not represent individual therapeutic recommendation or prescription.  For specific information and advice, please consult your physician.

Lupus Awareness: POP for Lupus and Put on Purple

Today is the last day of my thirty-day health writer’s challenge, and I have enjoyed this!

To finish off the month, I created a Word Cloud at the Wordle site from terms used throughout this blog.

During May 2012, it will be Lupus Awareness Month, and the Lupus Foundation of America and its many health advocates for lupus everywhere will be encouraging everyone to POP for Lupus — Put On Purple — to raise lupus awareness.

Put on Purple

Throughout the month of May, 2012 Lupus Adventurer will be posting a different lupus fact every day as part of my own efforts to raise lupus awareness.

Thank you for following this thirty-day challenge and lupus writing adventure with me!

Lupus Adventurer

Lupus and a zany Mad Libs poem? I think not!

Today’s health writer thirty-day challenge is to create and share a Mad Lib zany poem. To do so required filling in the blanks with various parts of speech that somehow might describe lupus, or relate to it. Coming up with 10 adjectives, 6 verbs, 6 adverbs, conjunctions and prepositions was too taxing of a mental exercise for my lupus clouded Saturday morning brain!

Besides, I have never been too enamored with Mad Libs, since they seemed to stop amusing me somewhere after my teenage years. Instead, it seemed more to my liking to write a light-hearted poem about the lupus blogging adventure. The following is my alternative response with a little more meaning, in the spirit of the thirty-day challenge.

Writing about the lupus endeavor
Challenges me every day
I strive to share relevant stuff
As I ponder the next thing to say.

So many who stop by have questions
Or comment or share a short thought
Yet, some folks I’m allowed to encourage
Because battles they fight, I have fought.

We struggle to share a perspective
Of a counter intuitive way
to approach every challenge of lupus
As a victor, and not with dismay.

It’s an honor to write for the readers
who follow this adventure with me
And strengthen each other in fellowship
Through the wonders of technology.

Lupus, Benlysta and Good Mornings

Lupus, Benlysta & Good Mornings

Several days in a row, and this is newsworthy!  Very recently I have seen signs of my lupus quieting, especially at both ends of the day.

Recently, it has been possible to count about 10 successive days of awaking feeling relatively well.  Lupus brain fog has been much lighter than normal, joint stiffness has been less severe and shorter lasting each morning, and my general sense of well-being has been consistently and significantly improved.  This sharply contrasts with a long-term pattern of feeling horrible, miserable and unable to function that has historically been part of my average morning experience.

Treatments with Benlysta passed the two month mark last week with my 4th infusion almost one week ago, delayed slightly by my trip out-of-town the previous Friday on the anniversary of 8 weeks since the infusions started.  Something about my health has been clearly different in these recent days!  Although it may take some time to confirm that these obvious signs of possible remission are due to my Benlysta treatment, there is little real doubt in my mind that the new medication is responsible for some observable improvements in my health.

I cannot recall a recent time when I felt good in the morning more than one or two isolated days each month, let alone each week.  Having now felt “decent” every morning for over longer than a week is completely unprecedented.  Yippee!

Feeling measurably better

After flying back into town late last Saturday night, it was almost a shock to wake up the next Sunday morning feeling fresh.  I was able to arise unusually quickly, be on time for an 8:00 a.m. sound check at church,  and  successfully performed a solo that was new to my repertoire  at the morning church service, without being encumbered by my usual morning brain fog.  Then, I attended choir practice, which I hate to have to admit I have missed on most Sunday mornings for months.

In addition to feeling measurably better when I get up on recent mornings, the rest of each day has been notably different, also.  Last week I recounted my surprise about feeling good the next morning after walking so far that my lupus arthritis crippled by end of the first night of my trip.  I was amazed to wake up feeling good in exchange for having an expected massive lupus flare. I didn’t expect that result after abusing my joints so badly!

On every morning of the trip, and continuing since returning home, I have felt equally good or slightly better.  This week I worked five whole days, unlike most in the past few months.  I have had a pattern of taking one or more half or whole days each week as sick leave, grateful that my ADA accommodation is so graciously supported by my employer.  Usually starting work at 11:00 a.m. can even be a struggle, but this week, I was at work on two days at 10:00.  I would really like this to be my new pattern.

After working five full days, I felt unusually perky at the evening end of each day.  After stopping work at 7:00 or 7:30 p.m. and a 30 minute commute, I still felt energetic and cheerful while fixing dinner and visiting with my family.

Most Sundays...

Most Sundays, I  have struggled just to feel well in time to attend the 10:00 a.m. worship service, and usually missed most of the 9:00 a.m. Sunday School class sessions.  My husband usually attends these earlier activities alone, and I join him in time to wave hello as he plays the piano prelude to the 10:00 worship service.

Again, today I awoke clear-headed, not groggy.  I walked without stumbling to the kitchen and got my own cup of coffee.  Within minutes of taking my morning medications, I am sitting here ready to write, and will soon to attend a special 9:00 a.m. choir practice with my whole brain and body participating.  I am looking forward to a fruitful Saturday in the hours ahead.

I praise the Lord today, for it truly is a good morning!

Lupus and Benlysta after five weeks and five days

Slight glimmer of improvement?

Today is October 4th, and exactly five weeks and five days after my first Benlysta infusion for my lupus.  Even though I have had some thoroughly exhausting activity over the past week, it seems many of the recent mornings are still showing a slight glimmer of improvement.  It may be too soon to tell, and this morning is clearly a great flaring exception, but I have been encouraged a little by awakening with what seems like slightly lighter symptoms followed by a little bit quicker and more complete morning recovery from lupus fog, CNS difficulties, joint stiffness and pain.

However, this morning dawned with an exceptionally acute flare, most likely triggered by last night’s lack of sleep from neuropathy pain.  Deep bone pain is in my fingers and wrists, feet and knees and the long bones of all four extremities.  However, while taking this morning off from work to help fight and turn around the effects of this flare, I am choosing to remember yesterday.

Morning fog clears

Yesterday was one of my most productive work days in weeks.  Morning fog was lighter and lifted a little more completely than normal.  It seemed as the day progressed everything inside me was clicking along like “clock work” and I got great things accomplished on my job.  I am choosing to focus on the recent slightly better mornings, and consider this morning as a mere stubbed toe in the ongoing battle against my lupus!

My prayers are that Benlysta will keep doing its thing and that it will soon make a big difference.

Lupus mornings when it hurts to think

Lupus and mornings are somewhat incompatible

It is no secret that lupus and mornings are somewhat incompatible.  If we could simply skip them, most of us lupus patients would opt out.  However, mornings just have a habit of returning on a daily basis!  There is no way out of them but to sleep or muddle through them.  However, most working people do not have the most leisurely of these options.

So, what can a lupus patient do when morning arrives suddenly as a rude awakening?  What are effective ways to turn around the foggy brain, stiff muscles, pain and deep headache that often follow an especially deep night’s sleep?

First, consider moving very slowly and speaking quietly.  I try to help those around me know how to walk gently with me through my morning.  Usually I seek out a quiet hug from my husband, quietly telling him it hurts to think, while imploring “my brain hurts, so please just give me a big hug for a minute.”  It helps him to know there is something very simple he can do to help me face my morning.  He is more empowered by that than if  I complain without giving him guidance about what kind of support I need or expect him.  My simple request frees him from feeling like he has to figure out how to solve my health problem, and puts boundaries around my expectations for help.  He is usually able to stop his morning activity and fast-paced motion for a while and help with a hug.

Next, coffee, food, gentle stretching, deep breathing,  medications and quiet reflection.  I try to get my metabolism slowly coaxed into motion so it can begin to counteract the negative effects of actions lupus has taken against my body in the night.  Accelerated cell death causes residual cellular debris deposits throughout my body, which are toxic and act to interrupt normal body chemistry and function.  This is a factor in the brain fog and joint stiffness common in lupus.  Gradual gentle coaxing into a more active mode helps stimulate circulation and struggling adrenaline, and also helps my body begin to deal with the extra physiological challenges lupus places on my metabolism each day.

Seek perspective and ask for God's help

Then, a light healthy breakfast.  I spend a few moments before I eat to thank God for my blessings, and most days, even for my lupus and it’s limitations.  I seek perspective and His help, ponder a passage from the Bible, and ask to borrow His strength for the day ahead.  In these quiet moments I am reminded that the day ahead should be balanced between my own needs and the needs of those around me.  I eat and reflect quietly while I wait for my mind and body to take a few steps forward out of sleep’s lingering pain, fog and stiffness.

Next, I feed the dog, finish drinking another cup of coffee on the porch for a few minutes,  exercise and play the piano for a few minutes.  The more I move and engage, the better I feel.  Slowly, but surely the day opens up before me as pain, stiffness and mental cobwebs clear away and I am more prepared to engage the responsibilities of the day.

Of course, there are days when my efforts are in vain, and I am unable to perform my normal responsibilities.  Thankfully, those days remain in the minority.  Usually, I am grateful to claim some measure of personal victory by mid morning, and then venture out to try to make a difference in my little corner of the world.

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